Going through a lot of the same. PCP said she believes all is connected. I have had a couple pos ana. Rheumatologist blood work shows negative. The worst symptoms for me is joint pain, Raynaud's, and PMLE (sun allergy that causes nausea, hives for a couple weeks, joint pain, flu like aches) and swelling of hands, face, ankles, and feet. I have other symptoms but these are the worst. The rheumatologist just dismissed it because of the labs she took not my pcp. I have learned that if you truly believe something is going on with your body you need to listen. If they don't listen to you, find one that will and won't give up until you get to the bottom of it. I pray that you find out something soon. 🙏💜

You need to have a dermatologist do a biopsy on your face. They are trying to find blood tests for lupus and they haven't found one. Check out the Illinois Lupus Association for recent info. According to them they are just testing blood tests. Rheumatologists are specialists and in my experience, that means they are "special." Too special. Make sure you have a really good primary care dr.

TSB66, Thank you. That is a valid suggestion. I have seen 2 rheumatologists. The first one was even worse, all he would tell me is, "Your normal. Be happy. You don't want to be diagnosed by anything from me."
So insensitive and illogical. Of course I don't WANT to be, however, I also don't want to not know what I have and be sick 80% of the time with no help to feel better. And being able to run 8 miles one day and then be so weak I can't walk across the house the next week, only to be able to run again in a few weeks when my flare is gone is not normal...
Sorry to vent...
I just read a suggestion in an article that perhaps doctors associated with Universities are more inclined for the out of the box thinking - or even just diagnosing past one test out of many diagnostic tools...maybe I will find a rheumatologist that way and have better results.

Here’s what doctors have to look for. Especially for insurance companies to take them seriously.

This a quote from the Lupus Foundation.

“What doctors look for to confirm a diagnosis
To help doctors diagnose lupus, this list of 11 common criteria, or measures, was developed by the American College of Rheumatology (ACR). ACR is a professional association of rheumatologists. Rheumatologists are the doctors who specialize in treating diseases of the joints and muscles, like lupus. If you have at least four of the criteria on the list, either at the present time or at some time in the past, there is a strong chance that you have lupus.

1. Malar rash – a rash over the cheeks and nose, often in the shape of a butterfly
2. Discoid rash – a rash that appears as red, raised, disk-shaped patches
3. Photosensitivity – a reaction to sun or light that causes a skin rash to appear or get worse
4. Oral ulcers – sores appearing in the mouth
5. Arthritis – joint pain and swelling of two or more joints in which the bones around the joints do not become destroyed
6. Serositis – inflammation of the lining around the lungs (pleuritis) or inflammation of the lining around the heart that causes chest pain which is worse with deep breathing (pericarditis)
6. Kidney disorder – persistent protein or cellular casts in the urine
7. Neurological disorder – seizures or psychosis
8. Blood disorder – anemia (low red blood cell count), leukopenia (low white blood cell count), 9. 9. lymphopenia (low level of specific white blood cells), or thrombocytopenia (low platelet count)
10. Immunologic disorder – anti-DNA or anti-Sm or positive antiphospholipid antibodies
11. Abnormal antinuclear antibody (ANA)”

I can't believe I am reading your post as I was just going to write basically the exact same post. I just got back from my second appointment with my rheumatologist and he reviewed my lab work and X-rays. He believes I do not have Lupis due to a negative ANA, although every test I have taken in the last few years shows a worsening dsDNA. I have most of the same symptoms that you do with a few different ones also. Good luck and I am very interested in the responses you get.